An Excerpt from ‘End of Life, ” by Bonnie Harmer and Jaime L. Huffman A New Nearctic Species of Diadocidia Ruthe Fungus Gnat

An Excerpt from “End of Life”

Bonnie Harmer Associate Professor of Nursing Jaime L. Huffman Associate Professor of Nursing with Abdul Waheed Dr. Bonnie Harmer received her M.S.N. from SVSU and her Ph.D. from the University of Lincoln-Nebraska.

Dr. Jaime Huffman, R.N. (not pictured), began her fourteenth year of teaching at SVSU in 2020. Her doctoral work focused on end-of-life decision making among U.S. military veterans and was completed at Wayne State University. She received her M.S.N. from SVSU and her B.S. from Western Michigan University.

The following excerpt is from their article “End of Life,” which was published on PubMed in 2020.

Ethics

The end of life can be rife with ethical dilemmas. It is important for the healthcare team members [to] fully comprehend the principles of bioethics, so they can face potential ethical dilemmas that might occur for their patients and family members at the end of life. The healthcare team member must recall that the goal of end-of-life care is to enhance the quality of life for the dying person and thus must always keep this goal in mind when helping the patient and family with ethical dilemmas. The first principle of biomedical ethics is autonomy, which is the patient’s ability to choose and have self-determination. When looking at potential ethical dilemmas that may occur at the end of life, the healthcare team member must assess if the patient can make decisions for themselves autonomously. The team member must assess the patient’s cognitive and developmental ability to understand the disease as well as care options and be able to make informed decisions related to those options.[7] The ethical principles of beneficence and non-maleficence merit concurrent consideration. Beneficence, or doing what is best for the patient, and non-maleficence, not causing the patient harm, are considered as balancing one another.[15] The healthcare team members need to do as much as they can to benefit the patient (beneficence) while taking the necessary precautions not to prolong the dying person’s suffering (non-maleficence). The final ethical principle for consideration in end-of-life care is justice. When considering the principle of justice, the healthcare team member needs to weigh what is fair or just for the dying patient and act according to those interests.[16] By keeping all four of these principles in mind, the healthcare team member is likely to help the patient and family make decisions that are ethically sound and enhance their quality of life. One of the potential ethical dilemmas healthcare team members can face [is] when a formerly competent dying patient has lost their decision-making ability.[17] If the dying patient is unable to state their wishes, the healthcare team member must look to an advance directive. An advance directive is a legal document that outlines the patient’s wishes and, in some cases, names

a durable power of attorney, a person who is designated to make healthcare decisions for the patient. Adhering to the wishes of the advance directives is the ideal way to maintain the ethical principle of autonomy. However, reports are that only twenty-six percent of Americans currently have an advance directive in place. The most frequently cited reason given for people not to have advance directives is a lack of awareness as to why this document is needed. Having advance directives in place for dying patients reinforces the need for early end-of-life conversations with the patient and family members. In these conversations, the dying person is encouraged to choose a person, who may or may not be [a] family member, who will respect their wishes, make decisions that align with those wishes, and advocate for those wishes should disagreements occur. Another ethical dilemma healthcare team members can face when caring for dying patients is when the care options chosen by the patient or the durable power of attorney cause unnecessary prolongation of suffering or are medically futile. Recalling that all end-of-life care should be patient-centered, healthcare team members should consider futile medical care can take a variety of “forms and be defined as futile only in the context of each patient’s situation.”[18] Examples of such care options as documented in healthcare literature are cardiopulmonary resuscitation on frail and elderly dying patients, completing screening tests that will not influence the comfort care given, and invasive procedures such as placement of endotracheal tubes and surgeries that will not add quality to the life of the dying individual.[18][19] These inventions might succeed in “providing physiological effects yet provide no benefit to the patient.”[20] Of course, all interventions merit consideration within the context of the patient’s diagnosis and the trajectory of their illness. Health team members should also be aware that the patient’s culture often influences end-of-life care decisions. Therefore, a thorough cultural assessment completed early in the end-of-life care might help healthcare team members, dying patients, and their family members have an understanding of expectations of care. When ethical dilemmas occur, and there is disagreement on how to proceed with the endof-life care for the dying patient, ethics committees can convene. The purpose of ethics committees is to advise the hospital staff, not to take over or direct patient care. Although the decisions of ethics committees are not legally binding, these interprofessional committees, members of which include physicians, nurses, chaplains, social workers, and case managers, serve to offer professional advice in situations where conflict has occurred.

Pain and Symptom Management

There are many symptoms patients face at the end of life, which can affect their quality of life. With proper symptomatic control, healthcare team members can enhance the quality of life for their dying patient. Symptoms that affect the physical domain include pain, respiratory, and GI symptoms as well as mobility issues. Symptoms such as depression and anxiety affect the domain of psychological health. It is the responsibility of all healthcare team members to assess these symptoms and work with the patient to control them as best as possible. The research shows adequate pain management is one of the most discussed concerns for patients facing the end of life.[21][22] Healthcare team members are encouraged to complete comprehensive assessments of the patient’s pain on a routine basis and structure care around these assessments, knowing that pain control frequently changes. Choosing the correct assessment tool for measuring a person’s pain depends upon the developmental and cognitive ability of the patient. The Child and Infant’s Postoperative Pain Scale (CHIPPS) can be used for neonates and infants while the PQRST scale is useful for all adults who are verbally capable of expressing their needs.[23] Healthcare team members should bear in mind some scales exist for those who are not capable of verbally expressing their needs. Scales such as the [Pain Assessment in Advanced Dementia (PAINAD)] can be used in instances when patients have a diagnosis, such as dementia or expressive aphasia[,] that limits their ability to self-report their pain. Regardless of the type of scale used, a thorough self-report is needed from the patient, which should inform the physical

exam completed by the healthcare team member. The healthcare team member should differentiate the different types of pain the patient is experiencing (i.e., neuropathic vs. visceral) and use this comprehensive data collection to help control pain symptoms. There are a variety of ways pain is treatable. Those that are pharmacological include the administration of opioids, non-opioids, and adjuvants such as antidepressants and corticosteroids. Non-pharmacological treatment for pain includes heat/cold therapy, meditation, massage therapy, and music therapy. The type of treatment chosen should be based on a comprehensive assessment of the patient and should include the patient’s needs and desires. Also, depending on the state laws where the patient is receiving endof-life care, medical marijuana is an effective treatment for pain management. One of the most common respiratory symptoms patients can experience during end-of-life care is dyspnea, or difficulty breathing. Research shows that as many as 70% of all dying patients report dyspnea symptoms during end-of-life care. As with pain, the healthcare team members must complete a thorough assessment of dyspnea symptoms. This involves assessing the rate, depth, rhythm, pattern, and effort of breathing.[24] Assessment tools, such as the Respiratory Distress Observational Scale (RDOS)[,] are available to help guide healthcare team members assessments. The RDOS measures a patient’s heart rate, respiratory rate, restlessness, paradoxical breathing pattern, accessory muscle use, grunting at end-expiration, nasal flaring, and look of fear. These categories give the healthcare team members comprehensive data to treat the symptoms of dyspnea. Pharmacological treatments for dyspnea include bronchodilators and the use of opioids.[25] Non-pharmacological interventions include position changes, oxygen therapy, and energy conservation techniques. It is important that comprehensive and frequent assessments of dyspnea take place, so treatment options change as symptoms and patient status change. GI symptoms that can occur at the end of life include anorexia and constipation. Both can be symptoms of the terminal disease the patient is living with, side effects of treatments, or both. Proper assessment as to the cause of these symptoms is key to treating them. Pharmacological treatments of anorexia include antipsychotics such as olanzapine and corticosteroids while nonpharmacological treatments include calorie-rich diets, foods patients enjoy, and odor control.[26][27][26] Constipation is another GI symptom patients can experience at the end of life. Again, a thorough assessment is needed to determine the cause of this symptom. Proper bowel assessment and examination of medication side effects merit consideration when assessing the patient with constipation. A common pharmacological treatment when constipation results from opioid use is a GI motility stimulator. Non-pharmacological interventions include hydration, fiberrich diets, and mobility. One of the most common mobility symptoms patients can experience at the end of life is fatigue. Fatigue is not general tiredness; patients instead express it as incapacitating exhaustion.[28] This exhaustion can severely affect the quality of life of the dying patient. Healthcare team members should know there are several validated tools to measure fatigue in patients. Among the most frequently used tools is the [Functional Assessment of Chronic Illness Therapy (FACIT)] Fatigue Scale (Version 4). This 13-question Likert-scaled tool can be used to assess how fatigued a person is and how this symptom limits their ability to engage in social interactions. Once the team completes a proper assessment of the patient’s fatigue, the healthcare team members can work to control this symptom. Pharmacological intervention for fatigue should first examine the cause. Some causes of fatigue with clear etiology include dehydration, anemia, infection, and depression. In these cases, the symptom of fatigue is often relieved with the treatment of the underlying cause. In cases where fatigue has no known etiology, stimulant drugs such as methylphenidate and steroids have shown to be effective.[29] Non-pharmacological interventions include exercise, physical training, energy conservation, and energy restoration.[29] To choose the most appropriate treatment for the patient, continuous assessment is necessary.

Psychiatric symptoms such as depression and anxiety affect the psychological health domain of the dying patient. These symptoms can range from moderate to severe and should be assessed using valid tools to direct treatment. A plethora of tools exists to measure the symptoms of depression and anxiety. The Self-Stigma Depression Scale and the Hamilton Depression Rating Scale can be used to measure depressive symptoms.[30] Whereas, the General Anxiety Disorder (GAD-7) and Hamilton Anxiety Rating Scale can be used to measure symptoms of anxiety.[31][32][31] Pharmacological interventions include SSRIs and NDRIs, such as bupropion.[33][34] Non-pharmacological treatment for depression includes cognitive behavior therapy and exercise.[35][36] Among the most common pharmacological interventions to treat anxiety symptoms are benzodiazepines.[37] Cognitive behavioral therapy, as well as meditation, is effective in reducing anxiety symptoms.[38] The symptoms of pain, dyspnea, anorexia, constipation, fatigue, depression, and anxiety are among the most common symptoms patient at the end of life can encounter. It is essential that healthcare team members screen for these as well as any other symptoms the patient may experience. Upon completion of an adequate assessment the patient and the healthcare team member can develop a plan of care that will help to enhance the patient’s quality of life.

Termination of Care

When symptoms are no longer manageable, or patient suffering is too great, termination of care must be a consideration. Termination of care is not something decided on a whim; rather it is part of the initial end-of-life discussions. When the treatment the healthcare team members are providing is medically futile or prolonging patient suffering, terminating the care and allowing the patient to die is necessary.[39] If the patient can participate in these decisions, it should be the patient’s decision when they want to terminate care. If the patient is developmentally or cognitively capable of making such decisions, this responsibility falls to a power of attorney. Termination of care decisions can also be informed by recommendations from ethics committees when ethical dilemmas are present. When recommending termination of care for the dying patient, healthcare team members are encouraged to bear in mind the previously discussed issues of concerns, including communication techniques, cultural considerations, and quality of life. At the center of every conversation about the termination of care should be the patient and their quality of life.

References

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Reprinted by permission of the authors.